Competitive swimmer -- using grit and a lung transplant -- winning life time battle against cystic fibrosis

By Bruce Newman bnewman@mercurynews.com

Posted:
09/12/2013 07:00:00 AM PDT

Updated:
09/14/2013 08:01:10 PM PDT

Click photo to enlarge

Anna Modlin holds her swimming medals at her Sunnyvale, Calif. home on Tuesday, Sept. 10, 2013. She won them during the swimming competition at the World Transplant Games held in Durban, South Africa. She won two gold, one silver and two bronze medals. Modlin, 32, suffered from cystic fibrosis since birth. She received a lung transplant three years ago and found she excelled in competitive swimming. (Gary Reyes/Bay Area News Group)

SUNNYVALE -- When the call came -- finally, after Anna Modlin had spent 119 days wondering whether she would live or die -- she was preparing to have her boyfriend pound on her. Again. He had already started the treatment when the phone rang.

Modlin had endured such pounding thousands of times -- sometimes as many as five hours a day -- since being diagnosed with cystic fibrosis when she was 1﻿ 1/2. "I would never skip a treatment," she says. "It was so ingrained in me that it took a good six months after that not to have the urge to do one."

But that November night in 2010, with new lungs being flown to Stanford Hospital for a transplant Modlin, now 32, had been uncertain she would survive long enough to receive, she decided she was done with the leathery gray lungs that had betrayed her for so long.

"I'm not going to do it," Modlin thought, defiantly giving the back of her hand to another pounding, and then began packing for a life she had never known before. One in which she didn't spend each moment gasping for breath. One her mother called a miraculous "reincarnation," in which she would become a gold medal-winning national and world swimming champion.

When Anna Modlin's parents were given the diagnosis of their child's disease, it was accompanied by a death sentence: The average life expectancy for someone born with cystic fibrosis in 1981, they were told, was 21. "That," says Anna's mom, Robin, "was devastating."

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But even as a sickly little girl, Anna remained upbeat. "It wasn't in the forefront of my mind that CF was going to get me one day," she says. "You can't live like that, so you're in fighting mode all the time. Until you get to the point where it overwhelms you." That moment arrived in 2010, when she was close to drawing her last, labored breath.

Therapeutic pounding

For the first decade of Modlin's life, beating on a CF sufferer's body with cupped hands was the only way to loosen mucus that formed on the lining of the lungs -- the primary problem created by the genetic mutation that causes CF. These so-called "percussion treatments" continued until a mechanical vest took their place. Then, at age 29, when Modlin's condition grew so dire that she was put on the transplant list at Stanford Hospital, the only treatment that gave her any relief was the laying on of hands.

Modlin had been featured in "The Power of Two," a documentary about the importance of organ donation that focused on twin sisters Anabel and Isabel Stenzel, CF sufferers who have both received double lung transplants. Modlin is the sisters' younger friend from their days at CF summer camp, and throughout the film, she is seen spiraling toward death as she awaits her turn on the transplant list. Her struggle looked so bleak that at one point in the film she says of her illness, "No matter how hard I try, no matter what I do, it's still going to win."

But the disease didn't win. She did.

"I have always come across as strong," Modlin says, "as someone who's beating the disease. That was always what everybody thought of me. And then when it shifted to where the disease was overtaking me, I felt like I failed at what I was doing my whole life. I felt like I wasn't living up to what I should be. It took a while before I realized that wasn't really my fault. I kind of owned it after that."

Her condition was so grave even before she was accepted as a suitable transplant candidate that she had to be hospitalized. "That was the moment when I realized, 'We're not getting out of this,' " she says. "Transplant is this thing out there that you never want to get to, but you also know it's there to save your life."

Modlin's mom had pushed her to join a junior swim team at Greenmeadow pool in Palo Alto when she was 6, because exercise and being in the water were thought to help ease the coughing that is both bane and balm to CF patients. Coughing expels the buildup that makes breathing difficult, but it is often a painful, racking process.

Swimming definitely helped, and she quickly became an aquatic star. And yet, she often had to climb out of the water and sit at the edge of the pool just to cough. "It's so weird that I don't cough anymore," she says now. "I have to actually work on my abs. Back then, I had abs of steel from coughing all the time."

'ICU delirium'

A quarter-century since she swam there, Anna Modlin still holds the 6-and-under butterfly record at Greenmeadow. "Her father and I would be on the sidelines rooting for her," Robin Modlin says, "and no one else knew why it was so incredible that this little girl was swimming like that."

Anna Modlin became a lifeguard and then a swim coach, but as CF took control of her life, she had to retire from competition. "There was no way we thought Anna Modlin would ever compete in a pool again," her mother says. By the time of her transplant, it had been five years since she set foot in the water.

Her recovery from the lung transplant was slowed by temporary kidney failure, which prevented the massive doses of steroids and anti-rejection drugs from clearing her system. She developed what's known as "ICU delirium." At one point while still in intensive care, she ripped out her central IV line -- which was pouring powerful drugs into her jugular vein -- and nearly bled to death. "I went crazy," she says. "I thought it was a Post-it note."

The transplant, which began two days before Thanksgiving in 2010, cleared her lungs of CF -- although the disease remains in her pancreas and other parts of her body -- and within 4﻿ 1/2 months of surgery she was back in the pool, breathing freely for the first time in her life. To give herself a goal, she entered the U.S. Transplant Games, and won five gold medals. When she got home, she looked up previous winning times at the World Transplant Games, and thought, "Hmm, I could probably do this."

At this summer's World Games in Durban, South Africa, Modlin took two more gold medals, one silver and two bronzes. "Her journey from end-stage lung disease to her remarkable accomplishments at the World Transplant Games demonstrates what transplantation is ideally capable of achieving," says Steve Singh, the surgeon who gave her new lungs. Robin calls the surgery "a total reincarnation of life."

Lung transplants have the lowest success rate of any organ transplants, with only half of the recipients living for five years. "After that, there isn't really a statistic," Anna says. "The rumor is that once you get to 3 years with no rejection, the possibility (of rejection) goes down significantly." With two months until the third anniversary of her transplant, she sees her lungs -- and her life -- as completely full now, not half-empty.